- Last Updated: 08 December 2015 08 December 2015
It is autumn in New England, and despite dry weather for the last couple of months, the leaves are beautiful. Such color in nature brings joy to our lives.
Preview screening of Ryan Prior's new film, "Forgotten Plague: ME and the Future of Medicine"
Nov. 15, 2014 - SAVE THE DATE!
You are invited to a special preview screening of Ryan Prior's new film, "Forgotten Plague: ME and the Future of Medicine," a film that tells what journalist Llewellyn King has called "the great unreported medical story of our time." You may have read about this project in Phoenix Rising, White House Chronicle, MECFS Alert video series, USA Today, Daily Beast, or Facebook. We are thrilled to have the film makers, Ryan Prior and Nicole Castillo, as special guests (via Skype), and there may be other special guests as well. Registration for this program will begin soon. Learn more about the film.
Massachusetts CFIDS/ME & FM Association Fall program and membership meeting.
Morse Institute Library, Natick, MA, November 15, 2014, 1-3:30 p.m.
Support group forming in Amherst/Northampton area
This group is for people with Lyme Disease and Chronic Fatigue Syndrome. Along with support from others, the group will explore Buddhist practices for improving health and well-being. The group is still forming and exploring possibilities of meetings in other locations within the 5-college area. The next meeting is October 19 at the Jones Library in Amherst at 1 p.m.
Get more information and join the group.
Pathways to Prevention Workshop
The Workshop for the Pathways to Prevention (P2P) program, “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” will take place on Dec. 9 and 10, 2014, in Bethesda, MD. You can register to attend the meeting in person or via live videocast. For more information, see the Advocacy section below.
Chronic Fatigue Syndrome Advisory Committee
The next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will be held the afternoon of December 3rd and 4th via webinar. Additional information will be provided in the coming weeks.
Sign up to get notices about these meetings.
In the News: The End ME/CFS Project
The Open Medicine Foundation (OMF) and top experts under the guidance of world-renowned geneticist Ronald W. Davis, PhD are launching a bold new project of collaborative research. The ultimate goal is to unlock the mystery of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Can ME/CFS research help you sleep?
In this presentation, “Can ME/CFS and FM Research Help You Sleep?,” Dr. Cindy Bateman explains the different types of sleep disturbance common to ME/CFS. She describes each type of disturbance and the body systems it affects. Several checklists can help you evaluate your symptoms and communicate with others what you are experiencing. She concludes with some general recommendations for improving your sleep. Dr. Bateman’s presentation, sponsored by the Centers for Disease Control and Prevention (CDC), and given on September 9, 2014, is now posted on Dr. Bateman’s website.
Sleep course for healthcare professionals (and also useful to patients)
The Sleep Problems in Chronic Fatigue Syndrome (CFS) is a web-based training course designed to teach clinicians and other healthcare professionals about the treatment of sleep problems in persons with CFS. Lesson 1 provides a brief overview of CFS. Lesson 2 gives an overview of sleep problems in CFS. Lesson 3 reviews how to evaluate CFS patients for sleep abnormalities. Lesson 4 presents interventions to optimize sleep in CFS. After the lessons, a case study will be presented.
The CDC CME CFS Sleep course is on the CDC's Chronic Fatigue Syndrome page. Although this course is designed for healthcare professionals, the information is also useful to patients. Dr. Cindy Bateman is one of the authors.
"Fibromyalgia – the latest in diagnosis and care"
Daniel J. Clauw, MD, Philip J. Mease, MD, Bret S. Stetka, MD, September 17, 2014
In an excellent overview article Medscape interviews three physicians about the current state of Fibromyalgia (FM) diagnosis and care. First, they define FM, what it is and what it isn’t. Next they present the range of diagnostic alternatives and how diagnosis is evolving. Lastly they discuss who manages FM patients, and give reasons why a knowledgeable PCP may be the best choice. Note: You have to register to view articles on Medscape, but registration is easy and free.
Read the article.
Women in pain survey results
Ed Coghlan, CEO of the National Pain Report, shares the following survey results:
The National Pain Report has released its survey results on Women in Pain. More than 2,400 women who suffer from chronic pain completed the survey on this very important and under reported topic. Some key findings are:
- 90% of women feel they have been discriminated against by the healthcare system.
- 84% feel they have been treated differently by doctors because they are women.
Could Gulf War Illness study shed light on ME/CFS?
Discover Magazine reports in a research study that Gulf War Illness (GWI) leaves a clear and measurable mark on the brain. Many of the symptoms of ME/CFS have similarities to the GWI symptoms. What could this research tell us about diagnosing and treating ME/CFS?
Advocacy and Activism
P2P - Make your voice heard!
- Submit your comments! The NIH Pathways to Prevention (P2P) program, “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” is accepting input on the draft evidence review until October 20. Our input can influence the outcome of the meeting on Dec. 9 and 10, 2014. For background on the evidence review, and instructions on how to submit your comments, see the excellent article, “They Know What They’re Doing (Not),” by Mary Dimmock and others. Comments from lots of patients are needed to really make an impact.
- Attend the workshop in person or via live videocast. We hope that if many patients attend, the P2P panel will be impressed by the size and strength of the patient community and will not ignore the voice of the patient. Register for the meeting here.
- Or, if you don't want to do either or both of these things, do SOMETHING!
Tips from a Lobbyist - MECFS Alert series Episode 67: Llewellyn King with Sean O'Neill
Llewellyn King writes:
“There is an important new video posted on You Tube in the mecfsalert series. This time the interview is with a lobbyist and he gives insights into how we can make our case. There is much that will be useful to activists here and I urge you to watch it and to share if with anyone you may have on a mailing list… this is a little different but shows the way ahead toward regular sustained funding for research.”
Watch the video.
What you can do to help yourself - #2) Be your own advocate.
ME/CFS and FM are serious and complex illnesses, with known and measurable biological characteristics. They are not "all in your head," laziness, or "just depression." The treatment is not "pull yourself together" or "just exercise more." Any family member or "friend" who repeats these untruths needs some loving but serious re-education.
- Suggest some specific ways they can be supportive to you.
- Ask them to look at the ME/CFS Primer to read about the biological basis of the illness.
- Write and rehearse your own 2-sentence description of your illness and how it affects you.
- Get started: What is your 2-sentence description of your illness? Share it on Face book.
Can you volunteer a few hours a month? Here are some specific ways you can help!
- Update our database – contact those whose email is bouncing - by postcard or phone. We don't want to lose touch with anyone!
- Medical educator - research medical/health care professional meetings in Massachusetts and find out if we can set up a table to distribute information on ME/CFS to doctors and other health care professionals.
- For someone local to Natick, MA: Assist our clerk - Take notes at Board meetings (need to attend in person). For this important task, we need a clear-headed accurate note-taker who can commit to attending 5 Saturday meetings during the year.
If you can help in any of these ways, please Contact Us. You need basic computer skills and ability to work independently. Your contribution of time and skill will make a difference!
Contribute funds to our Association at no cost to you! A portion of the sales price of most items you buy from Amazon.com will be sent to our Association every quarter. To set this up, click the Amazon Smile graphic on our home page or click here Amazon Smile. If you need to search for Massachusetts C F I D S Association in the charities list, and be sure to put spaces between the letters C F I D S. Then start your shopping from smile.amazon.com.
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